The schedule for this year's International Papillomavirus Conference in Berlin Germany has been finalized. My presentation, HPV - The Patient Experience is the first in the experience of the conference given by a patient and I commend the organizers of this conference in recognizing the need to include the voice of those most affected by HPV - the patients.
It is my hope that this will set a new standard by which future conferences will continue to include the voice of the patient. There is much that can be learned from the patient's input however for too long the medical community has not appreciated that they could learn anything useful from them aside from the results provided regarding physical research. But HPV is not solely a physical condition but a psychological one as well.
In finalizing my presentation I realize just how much of the psychological aspects of an HPV diagnosis is relevant to the development of guidelines currently only focused on scientific physical evidence. While this is certainly a significant factor, the psychological aspect simply cannot be ignored if the patient is going to be treated as a whole.
We are not just physical nor just psychological beings but a delicate combination of both. It is important for me to dispel the myth that providing the patient with information will only result in hysteria and upset. In my experience it is exactly the opposite. It is that lack of education of the patient which results in psychological distress. The feelings of not only the unknown but the loss of control over their bodies as well The loss of control is especially true in the case of persistent disease in which the patient cannot in many instances effectuate a change in the progression of precancerous lesions. Younger individuals, once feeling invincible with the world ahead of them are now fearful and concerned about the potential for loss of future fertility and possibly death - something which, because of their age they typically would never have had to face if not for HPV.
It is also important that women not continue to have to bear the burden of HPV diagnosis themselves and a test for men must be developed. In addition the development of a therapeutic vaccine for those already infected with the virus is paramount. The percentage of individuals who actually complete the three doses of the current vaccine in the US is only 30% and without a widespread public education campaign far more individuals will become infected than those protected.
This will certainly prove to be a precedent setting conference.
A site for individuals to share in the conversation regarding life with HPV, concerns about HPV diagnosis and treatment, and to receive support and feedback from others. This site is created in conjunction with The HPV Support Network website which offers a vast array of information for both patients and providers.
Sunday, August 21, 2011
Thursday, August 4, 2011
Comparisons Between AIDS and HPV
Both HIV/AIDS and HPV are viruses. Just as with HPV (Human Papillomavirus) which has been in existence for centuries, HIV/AIDS (Human Immunodeficiency Virus/ Acquired Immune Deficiency Syndrome) has also existed as an unidentified condition decades before it’s identity as a retrovirus was discovered in the early 1980s. This is the same time frame during which HPV was identified as being responsible for cervical cancer. Actually the retroviruses responsible for AIDS were discovered in the very same year, 1984, as was the connection between HPV and cervical cancer.
According to information from those who researched AIDS in the earliest years, the time of onset of symptoms could be ten years or more. Similarly, while the incubation period for HPV is usually three months, symptoms are usually absent and actual progression to an invasive cancer takes a similar amount of time, approximately ten years.
Dr. Robert Yarchoan of the National Institute of Health, made the following comment regarding the early days of AIDS diagnoses, “I remember doing a rough mental calculation of the number of gays in the country and the percentage who were likely to be HIV-infected, and estimating that there were half a million to a million people infected with this lethal virus who did not know it.” With HPV estimated to affect over twenty million Americans and more than six million more acquiring the virus each year, still few people are even aware of what HPV stands for.
By the mid-eighties however, far more extensive research was being conducted with respect to pharmaceuticals and vaccines and more so after the United States Congress allocated additional funding in 1986. Within ten years of the identification of the AIDS virus there existed medications which could control the disease, yet it took another two decades for the first vaccine to become available for HPV in 2006. Even this vaccine is limited and does not cover all cancer-causing strains of HPV.
While the Pap smear and subsequent HPV test has resulted in a dramatic reduction in the number of cervical cancers this is the result of early identification, the treatment for which is typically some form of invasive tissue removing procedure, but certainly not a medication which would be far less traumatic and result in fewer consequnces (physical and psychological) for women, including potential infertility.
So why is AIDS so familiar to the majority while HPV remains relatively unknown? It would appear that the governments direct involvement as well as its massive funding for AIDS research may be the answer. The media also played more of a role in educating the public than they do today with HPV. Yet, high risk HPV has now been identified as being necessary for the progression to a minimum of five different cancers; cervical, vaginal, vulvar, anal and oral, with other conditions resulting from low risk strains.
While HPV may not be fatal within a short period of time as AIDS was, it is ultimately still responsible for millions of deaths throughout the world each year. The question remains, just how many cancers will need to be attributed to HPV before the government decides to involve itself both in education and funding? Despite all the similarities, the difference in how each has played out since discovery appear quite disturbing.
According to information from those who researched AIDS in the earliest years, the time of onset of symptoms could be ten years or more. Similarly, while the incubation period for HPV is usually three months, symptoms are usually absent and actual progression to an invasive cancer takes a similar amount of time, approximately ten years.
Dr. Robert Yarchoan of the National Institute of Health, made the following comment regarding the early days of AIDS diagnoses, “I remember doing a rough mental calculation of the number of gays in the country and the percentage who were likely to be HIV-infected, and estimating that there were half a million to a million people infected with this lethal virus who did not know it.” With HPV estimated to affect over twenty million Americans and more than six million more acquiring the virus each year, still few people are even aware of what HPV stands for.
By the mid-eighties however, far more extensive research was being conducted with respect to pharmaceuticals and vaccines and more so after the United States Congress allocated additional funding in 1986. Within ten years of the identification of the AIDS virus there existed medications which could control the disease, yet it took another two decades for the first vaccine to become available for HPV in 2006. Even this vaccine is limited and does not cover all cancer-causing strains of HPV.
While the Pap smear and subsequent HPV test has resulted in a dramatic reduction in the number of cervical cancers this is the result of early identification, the treatment for which is typically some form of invasive tissue removing procedure, but certainly not a medication which would be far less traumatic and result in fewer consequnces (physical and psychological) for women, including potential infertility.
So why is AIDS so familiar to the majority while HPV remains relatively unknown? It would appear that the governments direct involvement as well as its massive funding for AIDS research may be the answer. The media also played more of a role in educating the public than they do today with HPV. Yet, high risk HPV has now been identified as being necessary for the progression to a minimum of five different cancers; cervical, vaginal, vulvar, anal and oral, with other conditions resulting from low risk strains.
While HPV may not be fatal within a short period of time as AIDS was, it is ultimately still responsible for millions of deaths throughout the world each year. The question remains, just how many cancers will need to be attributed to HPV before the government decides to involve itself both in education and funding? Despite all the similarities, the difference in how each has played out since discovery appear quite disturbing.
Tuesday, July 26, 2011
Changes in Immunization Practices May Reduce Oral Cancer
Until now, the ACIP (Advisory Committee for Immunization Practices) has only approved the HPV vaccine for girls and young women through age 26. This despite the fact that the FDA (Food and Drug Administration) itself approved the vaccine for use in boys and young men almost two years ago in 2009.
Since its approval in 2006, the Gardasil vaccine, originally approved only to prevent certain strains of HPV known to cause cervical cancer and their precancerous lesions has been expanded to include vaginal and vulvar cancers and their precancerous lesions as well. Last year, they extended this to include anal cancer.
Until now, including boys and young men would not be cost effective given the low percentage of women who actually go on to complete the three shot series.
Now however there has been an explosion with respect to the number of oral cancers which are predominantly affecting males and which has overall exceeded the number of cervical cancers annually. Previously, smoking and alcohol were considered to be the major causes of oral cancers.
In the time period from 1984 to 1989, 16 percent of oral cancers were attributed to HPV. In comparison, in the time period of 2000 to 2004 the percentage of oral cancers related to HPV had increased to 75 percent and, it is known that the risk of oral cancer increases related to an increase in oral sex and kissing.
During the ACIP meeting of June 22, 2011, testimony was heard from Aimee Kreimer, PhD of the National Cancer Institute. She stated, "At some point ... it is projected that there will be the same incidence of OP cancer in men as cervical cancer in women, If current trends continue, OP cancer in men will pass cervical cancer in 2025."
Many abstinence groups are opposed to the vaccine claiming, like the distribution of condoms in the past, that it was the equivalent of approval to engage in sexual activities. That argument is becoming weaker when simply the act of kissing is considered a risk factor for oral HPV related cancers.
Dr. Dong Moon Shin of Emory University’s Winship Cancer Center stated, “The time is now. For the HPV vaccine, cost is the only issue as side effects are minimal. Routine HPV vaccination has to be implemented very soon, for both boys and girls."
Given the information to date, it is apparent that the sooner the ACIP includes in their recommendations that boys as well as girls receive the vaccine, the greater the impact on all HPV related cancers will be.
Since its approval in 2006, the Gardasil vaccine, originally approved only to prevent certain strains of HPV known to cause cervical cancer and their precancerous lesions has been expanded to include vaginal and vulvar cancers and their precancerous lesions as well. Last year, they extended this to include anal cancer.
Until now, including boys and young men would not be cost effective given the low percentage of women who actually go on to complete the three shot series.
Now however there has been an explosion with respect to the number of oral cancers which are predominantly affecting males and which has overall exceeded the number of cervical cancers annually. Previously, smoking and alcohol were considered to be the major causes of oral cancers.
In the time period from 1984 to 1989, 16 percent of oral cancers were attributed to HPV. In comparison, in the time period of 2000 to 2004 the percentage of oral cancers related to HPV had increased to 75 percent and, it is known that the risk of oral cancer increases related to an increase in oral sex and kissing.
During the ACIP meeting of June 22, 2011, testimony was heard from Aimee Kreimer, PhD of the National Cancer Institute. She stated, "At some point ... it is projected that there will be the same incidence of OP cancer in men as cervical cancer in women, If current trends continue, OP cancer in men will pass cervical cancer in 2025."
Many abstinence groups are opposed to the vaccine claiming, like the distribution of condoms in the past, that it was the equivalent of approval to engage in sexual activities. That argument is becoming weaker when simply the act of kissing is considered a risk factor for oral HPV related cancers.
Dr. Dong Moon Shin of Emory University’s Winship Cancer Center stated, “The time is now. For the HPV vaccine, cost is the only issue as side effects are minimal. Routine HPV vaccination has to be implemented very soon, for both boys and girls."
Given the information to date, it is apparent that the sooner the ACIP includes in their recommendations that boys as well as girls receive the vaccine, the greater the impact on all HPV related cancers will be.
Friday, July 15, 2011
Tips for a More Accurate Pap Test Result
Most women have undergone a mammography, perhaps more than once. I myself have never made an appointment without being given specific instructions on what not to do the day of the exam. Don’t use any perfume, powder or deodorant is what someone planning a mammography is typically told.
Most women however are not provided with some also simple instructions when it comes to getting a Pap smear. Whether or not you comply with these recommendations can make a difference in the outcome of your results. In fact, they can interfere with accurate results. Although there has been a 75% reduction in cervical cancer over the past decades, the majority of that decrease today is the result of early treatment for precancerous lesions thus preventing them from progressing to cancer. So following these instructions continues to be important when it comes to your health and obtaining the most accurate results possible.
According to Women’s Health, the following are instructions which all women should be provided when scheduling a visit which will include a Pap test:
1. Vaginal douches are not recommended for the three days prior to the
Pap test.
2. Do not have sexual intercourse two days before your Pap test.
3. Take showers instead of tub baths two days prior to the exam.
4. Tampons, vaginal creams or medications, contraceptive foams and
Jellies are not advised I the 48 hours preceding the Pap.
5. Schedule your Pap one to two weeks after your period.
I’ve been having Pap tests for decades and cannot ever remember being given this information. The recommendations make perfect sense when considering the purpose of the Pap and just what is removed during the test. Any unusual substances such as contraceptive products and those contained in douches can effect the environment surrounding the cervix itself thus preventing removal of the cells necessary to provide a more accurate result. This is true of any outside substance which would include seminal fluid which his why sexual intercourse is discouraged as well.
I hope that you have been provided with this information when you have scheduled your Pap test. If not, you now have the tips which will help you to receive the most accurate results possible, and when it comes to an exam used to detect cervical cancer, we of course want the most accurate results possible.
Most women however are not provided with some also simple instructions when it comes to getting a Pap smear. Whether or not you comply with these recommendations can make a difference in the outcome of your results. In fact, they can interfere with accurate results. Although there has been a 75% reduction in cervical cancer over the past decades, the majority of that decrease today is the result of early treatment for precancerous lesions thus preventing them from progressing to cancer. So following these instructions continues to be important when it comes to your health and obtaining the most accurate results possible.
According to Women’s Health, the following are instructions which all women should be provided when scheduling a visit which will include a Pap test:
1. Vaginal douches are not recommended for the three days prior to the
Pap test.
2. Do not have sexual intercourse two days before your Pap test.
3. Take showers instead of tub baths two days prior to the exam.
4. Tampons, vaginal creams or medications, contraceptive foams and
Jellies are not advised I the 48 hours preceding the Pap.
5. Schedule your Pap one to two weeks after your period.
I’ve been having Pap tests for decades and cannot ever remember being given this information. The recommendations make perfect sense when considering the purpose of the Pap and just what is removed during the test. Any unusual substances such as contraceptive products and those contained in douches can effect the environment surrounding the cervix itself thus preventing removal of the cells necessary to provide a more accurate result. This is true of any outside substance which would include seminal fluid which his why sexual intercourse is discouraged as well.
I hope that you have been provided with this information when you have scheduled your Pap test. If not, you now have the tips which will help you to receive the most accurate results possible, and when it comes to an exam used to detect cervical cancer, we of course want the most accurate results possible.
Sunday, June 26, 2011
What Really Killed Farrah Fawcett?
Recently Ryan O'Neal sat down for an interview with CNN's Piers Morgan. When I first heard that he was claiming to have potentially been the cause of the late actresses death I was intrigued to see if he was going to comment about HPV (Human Papillomavirus).
It was truly disappointing not only to have no mention of HPV, but to blame it on of all things, his daughter? Unfortunately Ryan O'Neal has had a long history of anger, threats, and drug problems. Now we can obviously add denial to that list. How repulsive for any parent to refuse accountability and responsibility for his own actions and life decisions than to blame it on your child.
He stated in his interview that "we really don't know what causes cancer". Well Mr. O'Neal, in the case of anal cancer, which ultimately took Farrah's life in 2009, we DO know that more than 90% of them are the result of HPV.
While most people relate HPV to cervical cancer, they are blissfully unaware of the myriad of other cancers resulting from this virus nor that there is a vaccine available to help protect against two of the most high risk strains of the virus known to cause most cancers.
Knowing that HPV causes 99.9% of cervical cancers, and since instituting screening programs decades ago the incidence of cervical cancer in the US has dropped 75%. Anal cancers however have been on the rise. A research study conductd by the Fred Hutchinson Cancer Research Center in Seattle Washington shows that over the past thirty years anal cancer in women has increased by 78% while in men, it has increased a staggering 160%. That study was conducted in 2004. Who knows how much higher those statistics have risen in the intervening seven years.
While HPV was never mentioned in Farrah's documentary, statistics would suggest that HPV was involved (though there is a small likelihood that it was not). In trying to overcome the stigma of anal cancer, Farrah created her documentary to educate others regarding this little talked about cancer. Unfortuately, and especially in the opinion of those having HPV, she failed miserably in not providing any type of public service announcement letting people know about anal HPV and more importantly about the vaccine.
The HPV forums were raging for weeks after the documentary, which garnered millions of viewers, aired. Such a lost opportunity for someone of such celebrity not to have gone further and provided information which, since it aired, could have saved countless lives. It definitely has cost some.
I also wish that Piers Morgan, as a journalist, were more educated as to have posed a question regarding HPV in response to O'Neal's comment. It is far more likely if O'Neal had stated he knew he had HPV that perhaps yes, he possibly could have caused Farrah's cancer. Could the stress he attributes to his family life have affected Farrah's immune system making it more difficult for her body to control the HPV? This is certainly a more realistic conclusion.
Whether her cancer was the result of HPV or not, the statistics alone certainly warranted mention in her documentary. Will people remember the documentary? I'm sure they will. Would more people be asking their doctors about anal cancer, HPV and the available vaccine, which has been available since 2006, had it been mentiond? I'm sure they would.
It was truly disappointing not only to have no mention of HPV, but to blame it on of all things, his daughter? Unfortunately Ryan O'Neal has had a long history of anger, threats, and drug problems. Now we can obviously add denial to that list. How repulsive for any parent to refuse accountability and responsibility for his own actions and life decisions than to blame it on your child.
He stated in his interview that "we really don't know what causes cancer". Well Mr. O'Neal, in the case of anal cancer, which ultimately took Farrah's life in 2009, we DO know that more than 90% of them are the result of HPV.
While most people relate HPV to cervical cancer, they are blissfully unaware of the myriad of other cancers resulting from this virus nor that there is a vaccine available to help protect against two of the most high risk strains of the virus known to cause most cancers.
Knowing that HPV causes 99.9% of cervical cancers, and since instituting screening programs decades ago the incidence of cervical cancer in the US has dropped 75%. Anal cancers however have been on the rise. A research study conductd by the Fred Hutchinson Cancer Research Center in Seattle Washington shows that over the past thirty years anal cancer in women has increased by 78% while in men, it has increased a staggering 160%. That study was conducted in 2004. Who knows how much higher those statistics have risen in the intervening seven years.
While HPV was never mentioned in Farrah's documentary, statistics would suggest that HPV was involved (though there is a small likelihood that it was not). In trying to overcome the stigma of anal cancer, Farrah created her documentary to educate others regarding this little talked about cancer. Unfortuately, and especially in the opinion of those having HPV, she failed miserably in not providing any type of public service announcement letting people know about anal HPV and more importantly about the vaccine.
The HPV forums were raging for weeks after the documentary, which garnered millions of viewers, aired. Such a lost opportunity for someone of such celebrity not to have gone further and provided information which, since it aired, could have saved countless lives. It definitely has cost some.
I also wish that Piers Morgan, as a journalist, were more educated as to have posed a question regarding HPV in response to O'Neal's comment. It is far more likely if O'Neal had stated he knew he had HPV that perhaps yes, he possibly could have caused Farrah's cancer. Could the stress he attributes to his family life have affected Farrah's immune system making it more difficult for her body to control the HPV? This is certainly a more realistic conclusion.
Whether her cancer was the result of HPV or not, the statistics alone certainly warranted mention in her documentary. Will people remember the documentary? I'm sure they will. Would more people be asking their doctors about anal cancer, HPV and the available vaccine, which has been available since 2006, had it been mentiond? I'm sure they would.
Sunday, June 19, 2011
The New Side Effect of Cancer - Bankruptcy
There have previously been studies regarding the link to bankruptcy and cancer. For the most part this information has been obtained from those willing to divulge their bankruptcy filing. However, now for the first time research has been done utilizing the government’s public records regarding bankruptcy filings and the tumor registry recordings of cancer.
According to Scott Ramsey, MD and PhD who lead the study, “The risk of bankruptcy for cancer patients is not well known, and previous studies have relied on individual self-reports about medically related reasons for bankruptcy filing. By linking two irrefutable government records of cancer and bankruptcy, we are able to determine how financial insolvency risk varies by cancer type, treatment and other factors.”
Ramsey is a healthcare economist and an internist at the Fred Hutchinson Cancer Research Center. He is also a member of the Hutchinson Center’s Public Health Sciences Division which conducted the study linking the federal governments’ court bankruptcy records in 13 counties in western Washington with the state’s cancer registry data.
The results show that bankruptcy increases an astounding four-fold within the first five years after diagnosis. It is shown to double within the first two years. While medical debt is typically not something an individual enters into voluntarily, credit reporting agencies such as Experian, Equifax and Transunion, (the top 3 credit reporting agencies) continue to include this debt on the patient’s personal credit report.
These results were just presented at the annual meeting of the American Society of Clinical Oncology in Chicago. The study was conducted utilizing information from 232,000 adult cancer patients over a period of fourteen years and found that the length of survival correlated to the risk for insolvency.
Interestingly enough, those people on Medicare were less likely to be affected than younger individuals (also presumably with private or no insurance).
Other research has shown that the cost of cancer treatment in the United States has doubled over the past two decades. Many may presume that this is the result of the high cost of new chemotherapy drugs or innovative new treatments. The study concluded however that the actual cause of the dramatic rise in cost was the increase in the number of cancer patients themselves.
With FICO credit scores being utilized for just about everything these days, from obtaining a credit card to obtaining a job, Congress needs to look into modifying the current bankruptcy laws taking into account this new information. The longer a cancer patient survives, the more likely they are to become insolvent. Is what a cancer patient must endure to survive not enough of a punishment? Should a federal law designed to provide an individual with a fresh start be allowed to be utilized in such a way as to totally subjugate that purpose?
If one has a perfect driving record, why should their auto insurance rates go through the roof because they now have a low FICO score resulting from trying to survive cancer? It shouldn't. The road a cancer patient must travel in order to survive is difficult enough. Should they continue to be penalized by the existing bankruptcy laws as the price for having survived?
Perhaps when doctors are explaining to patients the potential side effects of their cancer treatment, filing bankruptcy should now be included in that list.
According to Scott Ramsey, MD and PhD who lead the study, “The risk of bankruptcy for cancer patients is not well known, and previous studies have relied on individual self-reports about medically related reasons for bankruptcy filing. By linking two irrefutable government records of cancer and bankruptcy, we are able to determine how financial insolvency risk varies by cancer type, treatment and other factors.”
Ramsey is a healthcare economist and an internist at the Fred Hutchinson Cancer Research Center. He is also a member of the Hutchinson Center’s Public Health Sciences Division which conducted the study linking the federal governments’ court bankruptcy records in 13 counties in western Washington with the state’s cancer registry data.
The results show that bankruptcy increases an astounding four-fold within the first five years after diagnosis. It is shown to double within the first two years. While medical debt is typically not something an individual enters into voluntarily, credit reporting agencies such as Experian, Equifax and Transunion, (the top 3 credit reporting agencies) continue to include this debt on the patient’s personal credit report.
These results were just presented at the annual meeting of the American Society of Clinical Oncology in Chicago. The study was conducted utilizing information from 232,000 adult cancer patients over a period of fourteen years and found that the length of survival correlated to the risk for insolvency.
Interestingly enough, those people on Medicare were less likely to be affected than younger individuals (also presumably with private or no insurance).
Other research has shown that the cost of cancer treatment in the United States has doubled over the past two decades. Many may presume that this is the result of the high cost of new chemotherapy drugs or innovative new treatments. The study concluded however that the actual cause of the dramatic rise in cost was the increase in the number of cancer patients themselves.
With FICO credit scores being utilized for just about everything these days, from obtaining a credit card to obtaining a job, Congress needs to look into modifying the current bankruptcy laws taking into account this new information. The longer a cancer patient survives, the more likely they are to become insolvent. Is what a cancer patient must endure to survive not enough of a punishment? Should a federal law designed to provide an individual with a fresh start be allowed to be utilized in such a way as to totally subjugate that purpose?
If one has a perfect driving record, why should their auto insurance rates go through the roof because they now have a low FICO score resulting from trying to survive cancer? It shouldn't. The road a cancer patient must travel in order to survive is difficult enough. Should they continue to be penalized by the existing bankruptcy laws as the price for having survived?
Perhaps when doctors are explaining to patients the potential side effects of their cancer treatment, filing bankruptcy should now be included in that list.
Sunday, May 29, 2011
Input Requested for International HPV Conference
I have been honored with a request to present a lecture at this years International Papillomavirus Conference in Berlin Germany. This is the first time that a patient has ever presented at such a conference and this is truly both an honor as well as an enormous opportunity to speak on behalf of those with HPV.
I would appreciate hearing your concerns, issues and other information you feel is relevant to today's testing, treatment and vaccine issues to name a few. Your input is valuable in presenting the most impactful lecture to 1400 members of the HPV community (researchers, clinicians etc).
Thank you in advance for your contributions.
I would appreciate hearing your concerns, issues and other information you feel is relevant to today's testing, treatment and vaccine issues to name a few. Your input is valuable in presenting the most impactful lecture to 1400 members of the HPV community (researchers, clinicians etc).
Thank you in advance for your contributions.
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